Nurses represent the largest group of health-care professionals in the United States
of America. Currently, 3.6 million nurses are positioned to contribute to the provision
of holistic person-centered care.[1] Internationally, nurses comprise the largest
group of health-care providers. Nurses are a vital resource for ensuring the provision
of safe and effective care for the global population.[2]
Nurses spend more time with patients and families than any other health professional
as they face serious illness.[3] Expert nursing care reduces the distress and burdens
of those facing death, and the ability to offer support for unique physical, social,
psychological, and spiritual needs of the patients and their families.[3] Collectively,
nurses have demonstrated a commitment to palliative care, with some nurses showing
even greater initiative in the treatment of end-of-life patients. A 2016 systematic
review of palliative care health services found more support for the role of nurses
than any other discipline. Of the 98/124 studies that described provider disciplines,
nurses were the most common interventionists working in teams or as sole practitioners
in 70% of studies.[4
5]
“Whole Person Care” is Not Just Goals of Care
Palliative care refers to the optimization of quality of life for both the patients
with serious illness and their families using special measures to anticipate, treat,
and prevent suffering. This care encompasses the continuum of illnesses including
physical, psychosocial, emotional, and spiritual needs of seriously ill patients.[6]
The Institute of Medicine notes a responsibility to ensure that end of life care is
compassionate, affordable, sustainable, and of the best quality possible.[6] Failure
to provide holistic care limits the effectiveness of palliative care and can contribute
to physical, social, spiritual, and/or emotional suffering.[3
7
8]
Palliative care can be provided concurrently with curative measures.[6] Concurrent
care is different than a traditional hospice model, where curative therapy, or life
extending measures such as palliative chemotherapy, generally have ceased. The concurrent
model of palliative care may be, particularly important in lower and lower middle-income
countries where access to curative care is limited. Like geriatrics and hospice, palliative
care generally will use a multidisciplinary team that may be made up of nursing, social
work, spiritual care, and medicine to meet the multifaceted needs of patients with
serious illness, or who are at the end of life.[4]
Distinguishing Different Roles of Nurses
The evidence supports that nurses work in a variety of roles. These include as being
members of a multidisciplinary consultation team, as individual practitioners in targeted
pain and symptom management, or as case managers.[4
6
9
10]
Registered nurses
A registered nurses (RN) educates, give advice, and provides emotional support to
patients and their family members. Other duties include physical assessments, health
histories, health promotion, counseling, education, medication and treatment administration,
wound care, and numerous other personalized interventions. RN's consult and collaborate
with a multidisciplinary team and contribute to the plan of care. RN can supervise
care delivery by other medical personnel like nurse aides as well as conduct research
in support of improved practice and patient outcomes.
Advanced practice registered nurses
Advanced Practice RN (APRN's) can provide excellent service to those suffering from
serious life-limiting illnesses. The educational preparation of APRNs allows a “greater
depth and breadth of knowledge and ability to synthesize complex data to develop,
implement, and coordinate comprehensive, holistic patient-centered plans of care with
goals of maximizing health, quality of life, and functional capacity.”[11] Depending
on state licensure, APRN's may have the ability to practice, furnish medications,
and bill independently.
Palliative Care Nursing
Palliative care nursing involves the assessment, diagnosis, and treatment of human
responses to actual or potentially life-limiting illness and necessitates a dynamic,
caring relationship with the patient and family to reduce suffering. Therefore, palliative
nursing is a subspecialty of nursing practice that continues to evolve as the art
and science of nursing, and palliative care evolves.[12]
Palliative care nurses work in varied settings including patients’ homes, residential
hospices, clinics, long-term and skilled care facilities, and acute in-patient facilities.[6]
Palliative care should adapt accordingly to meet the physical, emotional, social,
and spiritual needs of the patient and their families.[11] Palliative care nurses
may be hospice nurses, an advanced practice nurse (APN) with a master's degree or
higher, or an acute care RN with additional training. Currently, no standard education
for a “palliative care” nurse exists, commitment to caring for a patient with a serious
illness is a must. A palliative care nurse could have a wide variety of education,
training, and clinical experience.
Special skills of palliative nursing
Palliative care nurses have adjusted their frame of mind from one which revolves around
specific tasks such as vital signs, treatments, and interventions, to one of comfort,
symptom management, and support.[13] Many nurses involved in palliative care face
the challenge of combining the art of caring and the science of medicine into a cohesive
model that reflects compassionate, individualized care regardless of the environment.[7]
Palliative care nursing demands intense critical thinking, heightened levels of mental
functioning, and the ability to utilize complex palliative nursing skills.[14] Palliative
care nurses are repeatedly confronted with patients and families who encounter serious
end-of-life illness and death.[14
15] These situations are further complicated by complex social situations, difficult
diagnoses, challenging symptom management, and challenging communication concerning
patient death and grief.[12
13
14
15
16]
Communication
The ability to effectively communicate with patients and families is an important
skill for any palliative care nurse. Palliative care nurses must have the ability
to explain complex information, as patients are often seeking clarity on disease progression,
medications, and plan of care. Palliative care nurses must be able to communicate
this information to both the patient and family. It is within the nursing scope of
practice to thoroughly explain and educate patients and families on symptoms and treatments
through the end of life, including medication regimens.
Compassion
Merriam-Webster[17] defines compassion as “sympathetic consciousness of others’ distress
together with a desire to alleviate it.” Compassion for self can help to prevent burnout,
while compassion for patients and families helps to establish a supportive, trusting
relationship as symptoms change or worsen or as death approaches.
Human vulnerability
Although the time of on-going disease progression and at the end of life can be distressful,
it can also be a time of togetherness for patients and their loved ones. The palliative
care nurse has a window into some of the most intimate moments in a person's life.
Patients and families tend to remember the nursing response to their needs, which,
through communication, presence, symptom management, and other work within their multidisciplinary
team, allows nurses to leave a legacy through care.
Building on Current Roles of Nurses
Primary or generalist palliative care
The generalist nurse has the necessary skills and knowledge to care for dying patients,
as well as those with chronic, serious illness; this includes a basic ability to provide
relief from pain in addition to symptom assessment and management.
Specialist palliative care
The palliative care RN and APRN specialist has expert knowledge in palliative care,
including the pathophysiology of diseases, advanced pain and symptom assessment and
management, counseling and communication skills, and advanced care planning. They
also have advanced knowledge about caring for individuals with serious, life-threatening
illness, as well as those who are imminently dying.[18]
Palliative Oncology Nursing
Although palliative care is useful for a variety of conditions, and much of the high-quality
research completed is not unique to medical conditions, the evidence base is strongest
for cancer.[4] Early palliative care is particularly beneficial with two recent randomized
controlled trials showing that palliative care improves the quality of life of patients
with lung cancer and also when they are receiving bone marrow transplant.[8
19
20] Oncology nurses in palliative care will bridge the gap of continuity as they deliver
physical and psychosocial care throughout treatment and beyond. Oncology nurses are
in a unique position to advocate and address many ethical and legal aspects of care
as well as ensure the patient receives palliative care as the patient progresses through
illness from curative to palliative treatments.
Methods to Upskill the Current Nursing Workforce
In March of 2017 the American Nurses Association and Hospice and Palliative Nurses
Association (HPNA) presented a call to action for nurses to lead and transform palliative
care. One of the nursing recommendations included the adoption of End of Life Nursing
Education Consortium (ELNEC) curricula (Core, Geriatric, Critical Care, Pediatric,
APRN and Online for Undergraduate Nursing Students) as the standard for primary palliative
nursing education. ELNEC has also provided education in 90 countries including Japan,
Korea, China, Eastern Europe, as well as Kenya. ELNEC has been translated into Spanish,
Japanese, Korean, Chinese, Russian, Romanian, Albanian, and German.[8]
There are many educational offerings available for palliative care nurses to improve
their knowledge base in palliative and end of life care. Other offerings range from
1 day, simple classes to long, and certifications programs. Certification in Palliative
care is offered by the HPNA for Nurse Aides, licensed practical nurse/licensed vocational
nurse, RN and APN levels. Colleges offer online and classroom options for certificate
programs in palliative nursing. Alternative education including fellowship programs,
leadership programs, conferences, and ELNEC courses are also offered.
Of note, for international providers, Stanford offers an online resource, Palliative
Care Always (https://lagunita.stanford.edu/courses/Medicine/pc_always/Winter2016/about),
which is offered annually and has been used by thousands of participants to gain a
fundamental knowledge base about the practice of palliative care.
Sole Practitioners
The highest quality evidence for nurses as independent practitioners has been described
in the Education Nurture Advise before Life Ends (ENABLE) studies. The ENABLE intervention
included a series of 4 weekly sessions followed by at least monthly follow-up with
patients and caregivers until death. Sessions focused broadly on the quality of life
relevant issues, communication, and involved pro-active assessment and prevention.
ENABLE II showed benefits in quality of life and depression in patients, and the intervention
did not directly benefit caregivers. ENABLE III evaluated early versus later nurse
intervention; earlier intervention was associated with improved mortality with 63%
of patients getting early compared to 48% of patients receiving late palliative care
surviving to 1 year.[5
9
10]
Transitions in Health Care
The APRN provides on-going assessment and intervention so he/she can educate and guide
the patient and family on a realistic understanding of the disease processes. Not
only does this build a trusting relationship with the patient and family but also
promotes safe transitions and autonomy, as it allows the patient and family to be
an active part of developing a plan of care.[3
7
11]
Conventionally, medical care has focused on cure-oriented care in an acute care setting
based on episodic illnesses. However, people have begun to live longer with increasingly
complex chronic illness making this type of care insufficient. The service areas should
communicate, coordinate, and work together to care for the person as they promote
the goals and wishes of the person.
Care transitions are not only from the hospital to home. Transitions also exist in
the type of care which is being delivered to the patient. Points of transition in
care include a mix of palliative, cure-oriented or life-prolonging care, a transition
to palliative care only, or change to the end of life care.
For patients with longstanding serious chronic illness prognostic uncertainty makes
the transition to alternate levels of care difficult. With these multiple transitions
nurses must be able to work amidst the transitions and in a multitude of settings.
Nurses Supporting Community Practice Models
People facing serious and end of life illness prefer to be in their own home and community.
Palliative care in the community setting (defined here as care outside of the hospital)
therefore focuses on providing palliative care through established delivery systems,
such as home care and hospice, as well as collaborative partnerships with service
agencies and individual clinicians. The point is to maintain a person's life at home
or place of residence by maximizing the quality of life, optimizing function and providing
care that supports their goals and preferences. In community models, nurses may play
a crucial role in coordinating, delivering, and overseeing care in the home and community
by working indirectly with lay community health workers.
Home visits
Palliative care nurses can offer specialty consultation in the home setting. This
includes some of the complex, time-consuming care coordination, symptom management,
and end of life care. Some examples of where home-based palliative care can be utilized
include; office visits are a significant hardship, long intensive, or more frequent
visits or patients in areas without an available office-based palliative care practice.
Efficient models that utilize nurses, APRN, RN, and social workers, to manage the
person's medical, medication, activities of daily living, social and care coordination
needs. A nursing palliative care home-visit team may become primary care providers
or may co-manage care with other providers.
A home-based palliative care can provide an excellent opportunity to coordinate care,
decrease acute care visits, decrease cost, reduce hospital stay, and care for those
with serious chronic illness (es) in need of chronic disease management.
Nursing and Interactions with Technology
Use of telehealth
Telemedicine, also known as telehealth, is a rapidly developing application of clinical
medicine by which medical information is transferred via telephone, the Internet,
video, or other networks for monitoring health status, offering education, consulting,
and providing remote medical procedures or examinations. Telemedicine can take place
between providers and patients located in clinical settings (clinical video telemedicine)
as well as directly with patients in their homes (home telemedicine).
Although there have been no extensive studies of the use of telemedicine for the delivery
of palliative care, studies of patients with chronic diseases such as congestive heart
failure, chronic obstructive pulmonary disease and diabetes suggest that home telemedicine
may reduce rates of hospitalization and emergency department visits, reduce hospital
length of stay, improve clinical outcomes, and enhance patient's satisfaction. There
are still significant gaps in the evidence base between where telemedicine is used
and where high-quality evidence supports its use.
Technology allows providers in palliative medicine to use audio and/or video conferencing
with the presence of the patient and provider at the same time. The technology provides
a communication link between them that allows a real-time interaction to take place.
Conclusion
Nurses play crucial roles in palliative care, and the evidence supports nurses functioning
on palliative care consultation teams or as independent practitioners. Nurses can
be active at focused tasks (e.g., pain management) or in broad roles (e.g., case management);
although, patients and families with cancer have a spectrum of needs that nurses can
play a critical role in alleviating. Evidence supporting independent practice is especially
important in lower resourced settings where nurses also may play a crucial role supervising
community health and lay workers or volunteers.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.